What to Try Next?

[lynn]

DS has a Dr. appt tomorrow, and I need to clarify what I want, so I turn to all of you wonderful people!

 

We tried a 17 day steroid burst, a month of Augmentin (850 mg x2), and a month of Azithromycin (500 mg x1) The result: A child with a reduced attention span, more OCD, and no improvement in rage and anxiety problems. I would conclude that maybe he doesn't have PANDAs, but he has a 150 on the Cunningham test with very high normal neuronal antibodies. High DNASE, normal ASO titers. And, although almost all of the other indicators are normal, he is deficient in 13 out of 14 s.pneumoniae titers (that might have been spelled a bit off.) So the possibilities, as I see them, are:

 

1. Try another abx

2. Go and see an ENT and see if there really is a sinus infection (Kimballot made me think!)

3. Get a stool test and see if the gut is the problem and yeast or bacteria is masking progress that is being made

4. Go directly to IVIG

 

The problem is, I have no particular reason to believe that IVIG will work for my particular child. ABX and prednisone didn't help. Advill helps just a bit and not for long. Also,l if DS still has an ongoing infection, I want to hold off on IVIG until it is under control

 

Any reflections or advice greatly appreciated!!!

[matis_mom]

DS has a Dr. appt tomorrow, and I need to clarify what I want, so I turn to all of you wonderful people!

 

We tried a 17 day steroid burst, a month of Augmentin (850 mg x2), and a month of Azithromycin (500 mg x1) The result: A child with a reduced attention span, more OCD, and no improvement in rage and anxiety problems. I would conclude that maybe he doesn't have PANDAs, but he has a 150 on the Cunningham test with very high normal neuronal antibodies. High DNASE, normal ASO titers. And, although almost all of the other indicators are normal, he is deficient in 13 out of 14 s.pneumoniae titers (that might have been spelled a bit off.) So the possibilities, as I see them, are:

 

1. Try another abx

2. Go and see an ENT and see if there really is a sinus infection (Kimballot made me think!)

3. Get a stool test and see if the gut is the problem and yeast or bacteria is masking progress that is being made

4. Go directly to IVIG

 

The problem is, I have no particular reason to believe that IVIG will work for my particular child. ABX and prednisone didn't help. Advill helps just a bit and not for long. Also,l if DS still has an ongoing infection, I want to hold off on IVIG until it is under control

 

Any reflections or advice greatly appreciated!!!

Lynn,

I would say you may need to give it more time... It took a few months of antibiotics, tonsillectomy, and a 4-week steroid burst for our ds to see results. I am sorry I don't remember your particulars, but has your child had a tonsillectomy yet? I think consulting an ENT and doing the stool test are good ideas, and you probably want find the source of the strep before you proceed with IVIG anyway. Also, have you tested all family members? It could be that there is someone in the house who keeps messing with your son's immune system!

Anyway, how long is your steroid prescription? We did not see full results until the end of the fourth week, so hang in there, and while you wait, go makes those appointments!

 

Isabel

[kimballot]

I am wondering what type of doc you are seeing tomorrow and who ordered the ABx and steroids - and the immune status panel and ASO/DNASE B. Was it a PANDAS doc?

 

From the looks of things, your son has an infection brewing somewhere. Have the ASOs and DNASE B gone down since you started ABX?

 

Do you have any idea where the infection is? Given low S. Pneumoniae, there may be something brewing in the sinuses. S. Pneumoniae is not the same as Group A Strep, but if you have an infection started, there could be group A Strep on top of it (I believe that is true at least) (you KNEW I was going to say that! - I should change my name to "Momofasinusinfection")

 

Perhaps you should request re testing ASO and DNASE B to see if they are going up or down.

 

Also, have you checked mycoplasma and Lyme?

Edited June 23, 2010 by kimballot

[lynn]

Thanks Kim and Isabel.

 

You are right, I should sign myself "impatientmom" It is really hard to wait for things to work or not work!

 

I am seeing Dr. B, who ordered all my various tests. We got a second blood draw after DS had been on Augmentin for a month and we will get the results today--they will include the Western Blot test (the lab unaccountably didn't run it before) and the C3 complex as well as a rerun of the titers. Mycoplasma was previously negative. Dr. B also thought there might be a sinus infection, but wouldn't 2 months of antibiotics have at least calmed it down? Or do I sound like one of the anti-PANDAs Drs? He is still making a sniffing/snorting noise, which I always thought was a tic. Anyone know a good ENT in NYC?

 

I really appreciate everyone who posts on this board. You are the only people that I don't have to explain things to!

[lfran]

This is a little early for me to post, because I have only seen improvements for two days, but...

 

DS8 is on 3rd week of abx and we were seeing lno improvement -- actually it was getting worse. He was also doing a nose snort tic. We changed probiotics from kefir (included strep probiotics) to a pill that didn't and added xylitol nose spray and xylitol gum (am still searching for toothpaste with a flavor he likes). Saw an immediate and dramatic improvement. These things are easy to try at home. (Thank you to the person who posted last week that xylitol has anti-strep properties!)

 

Also, I make sure that DS8 also has his own toothpaste, so as not to spread any germs from toothbrushes back and forth.

 

Thanks Kim and Isabel.

 

You are right, I should sign myself "impatientmom" It is really hard to wait for things to work or not work!

 

I am seeing Dr. B, who ordered all my various tests. We got a second blood draw after DS had been on Augmentin for a month and we will get the results today--they will include the Western Blot test (the lab unaccountably didn't run it before) and the C3 complex as well as a rerun of the titers. Mycoplasma was previously negative. Dr. B also thought there might be a sinus infection, but wouldn't 2 months of antibiotics have at least calmed it down? Or do I sound like one of the anti-PANDAs Drs? He is still making a sniffing/snorting noise, which I always thought was a tic. Anyone know a good ENT in NYC?

 

I really appreciate everyone who posts on this board. You are the only people that I don't have to explain things to!

[kimballot]

Hi Lynn -

 

I am curious to know how your appointment went today and if you got some results from your blood tests.

 

Also - you asked if 2 months of ABX would calm down a sinus infection- hard to say. It should calm it down, but sometimes they come right back afterward, and sometimes you have to try or 3 abx to ge the one that works. My understanding is that the sinuses do not have a lot of capillaries - therefore, it is difficult to get medicine (antibiotics) to work well in sinuses.

 

Plus... you may have some allergies at play here too (you did not mention those earlier).

 

If you could post about your experience today or PM me if you are willing / able to share. Thanks!

[kcdc3]

Lynn,

 

You said Mycoplasma was previously negative.....was that just IgM? How about IgG? Some docs do not treat a high IgG thinking it means past infection, but I am proof that you need to pursue treating a high IgG!! My dd had high Myco IgG, but negative IgM, has been on Biaxin for 90 days and is doing well. Not completely cured, but leaps and bounds from where we were 3 months ago. No tics at all (we were having 240 an hour) and OCD down probably 85 - 90%.

 

Kim

[lynn]

Just wanted to update. Dr. B said sinus infection is gone--no more green stuff in his nose, DNASE has fallen to high normal, ASO still normal. Western blot negative, mycop negative, IgG, all titrated IgA all normal. Immune complexes double the normal range, which apparently indicates that there is immune activity, but still deficient ( >.3 for 13 out of 14) in s. pneumonaie. And there's the positive result for the Cunningham test

 

Dr. B suggested that we move directly to IVIG, but we are still worried, both about the theoretical risks (DH) and about the potential that it will make things much worse without the Cinderella fix at the end (me) Everything I have tried for DS has had the bad part but skipped the oh boy part, and the fact that he has not had a positive response to steroids or two whole months of two different abx worries me. I asked, "Is it possible that he does not have PANDAS at all?" and Dr. B said, it is certainly possible. However, his take is that IVIG would do no harm, and if it isn't PANDAS, it just wouldn't work. I still need to think about this...for now, we are trying another abx (2 300 mg caps one time per day of Omnicef)

 

Wondering, if we do decide to do it, when in DS's typically overscheduled summer we could get it in?